Midland Boy With Rare Disorder Picked For Trials

MIDLAND (AP) - Only two dozen people have been selected to take part in the first round of human clinical trials for a rare genetic disorder known as Angelman syndrome, and an 8-year-old Midland boy is one of them.

The disorder affects 1 in 15,000 people around the world, according to The Angelman Syndrome Foundation. Most are unable to talk, have seizures, struggle with balance and are mentally impaired.

Michael Ecker hasn't developed mentally as quickly as others his age, seizures are frequent for him, and he requires constant care. But his parents, Barb and Mike Ecker, say he's always smiling.

"Through it all, he was always happy and a loving little boy," Barb Ecker told The Saginaw News.

The family will be in Tampa, Fla., on Thursday and Friday for tests and treatment. They also will travel to Florida on July 7 and Aug. 6

Barb Ecker and her husband are excited about what the testing could mean for Michael.

"If this medicine makes him more cognitive and more aware to do little things like that, then bring it on," Barb Ecker said. "We feel very proud that we are going to (be) representing families from all over the world. It's emotional. There's a lot of families that would have liked the opportunity."

Mike Ecker said Michael will sit in front of a board of scientists for three hours, without his parents, and will undergo electroencephalograms, blood work and other tests.

"They want to watch him. They want to evaluate him," Mike Ecker said. "They gave us the itinerary, and it was pretty intense."

The Eckers aren't the only family from Michigan taking part in the clinical testing.

A 6-year-old girl from Jackson County's Summit Township also has been selected.

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